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Stay Paused!
Catherine Doogan 13th May 2020
It's a dull Wednesday morning. The lockdown changes and government advice has now changed from Stay at Home to Stay Alert. This has caused widespread divisions with people more confused about the unlocking terms. We are all to rely on our common sense but the thing about common sense is that we all think we have it but it is not the same for you or for me. It depends on our values and our ability to mentalise others. This conept of theory of mind comes into play here. If people can not put themselves in others shoes then it shapes their sensibilities about keeping others safe.
The context in which N-ROL was created and continues to be shaped in is challenging. But in many ways it is challenging for us the therapists. It challenges our assumptions.
As a Clinical Psychologist I know that social support is a protective factor against low mood. But the people we are treating are 'isolating'. We know that physical exercise has huge mental health benefits and yet many do not go out at all. When Ben Beare and I started configuring the groups we assumed that people would feel scared and frustrated at being at home. It is not a universal truth. Many of the patients and their family members have told us that it is a time out for them. The life they had before lockdown/brain injury was hectic, they were working too hard or trying to fit too much in (sound familiar anyone?).This is a time for pause. To reflect on what their core values are and for some the simplicity is a relief.
There are other assumptions that they have made us rethink. For some the number of adults in the household have not changed but the relationship since their brain injury and lockdown has intensified and roles have altered. But for some daughters and sons have come home to be together in this time of personal and global crisis. Perhaps before a daily visit or weekend trip out of their own busy lives would have sufficed but the idea of not seeing their family member has catapulted them into making what ordinarily would have seemed a much bigger sacrifice. They are now all relearning how to live together in a unit again after years sometimes.
This adjusting to an altered dynamic comes up again and again in the Mood and carer cafe groups. The person with the brain injury can't perform previously effortless tasks either in the same way or at all. For one couple the husband with the brain injury can no longer make his wife a cup of tea due to weakness on one side. Its is not the act itself of course. It is the meaning and intention behind the act. Another couple are learning how to swap roles and finances were the topic of a whole Me My Stroke and Us group yesterday. Again it is the act of one partner in a long term relationship needing to relinquish a role and the other partner picking up the slack, as it were. I compared these changes in dynamic to a footballer being sent off the pitch and the remaining members needing to fill the gap. That perhaps members of the team need to use skills they don't usually have to and may not be as expert as the player that got sent off....you see where I am going?
But the meaning behind making the tea, or cooking for another or doing the finances for others was to be in the role of caring. These are now the ones living with a life changing stroke or brain injury. These men and women now need help from their wives, husbands, sons or daughters or brothers and sisters. Accepting help it seems is a lot harder than giving it. Being cared for entices feelings of vulnerability and thoughts about being weak and sometimes useless. Some carers resent the injured person saying thank you or showing gratitude. For them it is just something they need and even want to do. But further exploration of these feelings reveal that they want their loved one to get better so they too can have their previous life back too.
Every person's life in these groups are different. Some had their stroke or brain injury before Covid-19 and some because of contracting Covid-19 and they thought they would die twice. We're still processing that together.
From a team point of view what I realise is that finally as a psychologist I am working systemically. Family members attend and participate in all the groups with consent from other members. Families are getting rehabilitation together. Ben and I and the other Occupational Therapists are sharing goals based on daily feedback and really getting to know our patients.
I realise that since working on an inpatient Unit I have not had so much contact with the same people and I love it. I am getting to know these people in their own homes, and they are learning from each other and I am learning from them.
I have never run a joint group with a physiotherapist. But is seems to work. Better than that it gives a whole new dynamic and perspective to people. Ben and I are learning to work together. I say that if so and so's mood was better he would engage in rehab more fully and feel better about himself. Ben says if he could move that arm better he would feel better about himself.....and the truth is not somewhere in the middle but both. There are multiple truths.
So instead of people worrying about the future and what our lives will look like in this slow and perhaps painfully so unlocking of life as we knew it, perhaps take some advice from our N-ROL community. Stay Paused. Live in the now and appreciate what is beside you. Stay Alert to that. At least for now.....
C-ROL OUT
Catherine Doogan 22nd September 2020
It's 6.27. It's dark. I looked at my phone half an hour ago and it was from Sasha. She is a bright-young (enough to be my daughter) medical student who volunteered for N-ROL for the month of July. I could count how many times at 6.03 or 6.29.or 6.54 that there wasn't a whatsapp from someone from the N-ROL team (usually Ben) about something that had to be done today or some patient related concern.
Please me father, it's been 5 months since I wrote since my first and only blog.
What we did in N-ROL was not run rehab groups on-line. I mean we did. But reflecting now in the dark we did more than that. We created an on-line community of stroke
and brain injury patients and provided them with a Neuro-Rehabilitation service.
They met the consultant Neurologist- numerous times if they wanted.
They learned about their stroke, symptoms, risk factors, not only from themselves but from others.
This enabled and facilitated insight and awareness. This made them feel less alone.
They saw others in better, similar or worse situations...at least what they perceived to be those labels. This normalised what they were experiencing. Some had never met anyone else with a stroke.
They got physical. 1,2 or 3. Some people made such gains they would be upgraded. Lots received Pilates. If their shoulder hurt they would get a 1:1. with the physio. If they were very anxious or depressed, they would get a 1:1 with the Clinical Psychologist. If they had medical, medication or sought further understanding we booked them in with the neurologist. If they had technical issues we booked them in with Pedro.
Many were experiencing fatigue and they received a fatigue programme. Many found their voices again through the dysarthria or cog comm groups. Many established structure and routine through the weekly timetables. This for many was in addition to the rehab they were already and increasingly receiving at home. We were excited that patients were getting higher dose and intensity (?) during these troubling times.
And the service was an inclusive one. Husbands, wives, sons and daughters attended all or some interventions with their loved ones. Carers were working from home and would log-in once a week for their weekly therapeutic hour. They shared painful experiences, laughed and cried with each other from the safety of their own homes.
Some were too busy with their work or community teams or only wanted one group a day or 3 groups a week or no groups before 12 and we responded, changed the times of the groups, moved ourselves around, virtually.
Most want to raise money, give thanks or raise awareness for others so they can too receive a type of service like this.
Most people wanted to remain in touch with each other. Gave consent for us to swap details. They felt held and contained in an incredibly unprecedented time.
We did not run virtual groups as a response to people not getting enough rehab during covid.
We had created an on-line community rehab service where no-one asked or cared what anybody's post-code was.
Surely that is innovative?